{"id":13553,"date":"2022-12-27T13:48:24","date_gmt":"2022-12-27T12:48:24","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=13553"},"modified":"2023-02-06T10:52:20","modified_gmt":"2023-02-06T09:52:20","slug":"202209-marie-claude-boiteux_perspectivas-de-los-pacientes-y-de-los-acompanantes","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/es\/202209-marie-claude-boiteux_perspectivas-de-los-pacientes-y-de-los-acompanantes\/","title":{"rendered":"Marie-Claude Boiteux (Presidenta Cutis Laxa International, Francia): Perspectivas de los Pacientes y de los Acompa\u00f1antes: La trayectoria de los pacientes"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-13521 aligncenter\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-300x200.jpeg\" alt=\"\" width=\"300\" height=\"200\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-300x200.jpeg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-1030x687.jpeg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-768x512.jpeg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-1536x1024.jpeg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-2048x1365.jpeg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-1500x1000.jpeg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02630-705x470.jpeg 705w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<p>El Recorrido del Paciente es un testimonio personal que refleja la historia y las necesidades de los pacientes con una enfermedad rara.<\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13524\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-300x181.jpeg\" alt=\"\" width=\"290\" height=\"175\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-300x181.jpeg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-1030x622.jpeg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-768x464.jpeg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-1536x927.jpeg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-2048x1237.jpeg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-1500x906.jpeg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02633-705x426.jpeg 705w\" sizes=\"auto, (max-width: 290px) 100vw, 290px\" \/> <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13530\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-300x181.jpeg\" alt=\"\" width=\"289\" height=\"175\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-300x181.jpeg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-1030x623.jpeg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-768x464.jpeg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-1536x929.jpeg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-2048x1239.jpeg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-1500x907.jpeg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/DSC02644-1-705x426.jpeg 705w\" sizes=\"auto, (max-width: 289px) 100vw, 289px\" \/><\/p>\n<p>Representa una perspectiva colectiva sobre la carga de la enfermedad y las necesidades de las personas que tienen la experiencia de primera mano de vivir con una enfermedad rara.<\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13533\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751-300x217.jpg\" alt=\"\" width=\"249\" height=\"180\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751-300x217.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751-1030x745.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751-768x556.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751-705x510.jpg 705w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_162751.jpg 1385w\" sizes=\"auto, (max-width: 249px) 100vw, 249px\" \/> <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13536\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-300x186.jpg\" alt=\"\" width=\"291\" height=\"180\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-300x186.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-1030x637.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-768x475.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-1536x950.jpg 1536w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-2048x1267.jpg 2048w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-1500x928.jpg 1500w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163316-705x436.jpg 705w\" sizes=\"auto, (max-width: 291px) 100vw, 291px\" \/><\/p>\n<p>Es un documento de referencia b\u00e1sico para desarrollar un recorrido de atenci\u00f3n de salud y gu\u00edas para atender las necesidades identificadas.<\/p>\n<p style=\"text-align: center;\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13539\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317-300x172.jpg\" alt=\"\" width=\"305\" height=\"175\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317-300x172.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317-1030x591.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317-768x441.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317-705x405.jpg 705w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163317.jpg 1092w\" sizes=\"auto, (max-width: 305px) 100vw, 305px\" \/> <img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-13542\" src=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318-300x178.jpg\" alt=\"\" width=\"295\" height=\"175\" srcset=\"https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318-300x178.jpg 300w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318-1030x612.jpg 1030w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318-768x456.jpg 768w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318-705x419.jpg 705w, https:\/\/www.cutislaxa.org\/wp-content\/uploads\/2023\/01\/IMG_20220915_163318.jpg 1061w\" sizes=\"auto, (max-width: 295px) 100vw, 295px\" \/><\/p>\n<p>Cutis Laxa es una enfermedad tan heterog\u00e9nea que no se puede crear un solo Curso del Paciente; se necesitan dos para representar las necesidades espec\u00edficas de los pacientes con los diferentes tipos de Cutis Laxa.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El Recorrido del Paciente es un testimonio personal que refleja la historia y las necesidades de los pacientes con una enfermedad rara. Representa una perspectiva colectiva sobre la carga de la enfermedad y las necesidades de las personas que tienen la experiencia de primera mano de vivir con una enfermedad rara. Es un documento de [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":13518,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[77,82,74,79,76],"tags":[],"class_list":["post-13553","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-encuentros-acontecimientos-y-manifestaciones","category-fotos","category-investigacion","category-investigacion-medicina-genetica","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Marie-Claude Boiteux (Presidenta Cutis Laxa International, Francia): Perspectivas de los Pacientes y de los Acompa\u00f1antes: La trayectoria de los pacientes - CUTIS LAXA INTERNATIONALE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.cutislaxa.org\/202209-mrs-marie-claude-boiteux-patients-and-caregivers-perspectives\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Marie-Claude Boiteux (Presidenta Cutis Laxa International, Francia): Perspectivas de los Pacientes y de los Acompa\u00f1antes: La trayectoria de los pacientes - CUTIS LAXA INTERNATIONALE\" \/>\n<meta property=\"og:description\" content=\"El Recorrido del Paciente es un testimonio personal que refleja la historia y las necesidades de los pacientes con una enfermedad rara. Representa una perspectiva colectiva sobre la carga de la enfermedad y las necesidades de las personas que tienen la experiencia de primera mano de vivir con una enfermedad rara. 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